Chronic illness is a big part of my story.
My partner, too, lives with Ehlers-Danlos syndrome (EDS), arthritis, and co-occurring mental health struggles. Between the two of us, our closet is practically a pharmacy, and I’m pretty sure we should have an honorary medical degree by now based on the hours we’ve spent researching our conditions.
As 2019 approaches, my newsfeed is already filling with New Year’s resolutions. I see friends planning to run marathons, become morning people, learn to meal plan, and all sorts of ambitions that — quite honestly — sound exhausting to me.
I figure for those of us who are just trying to adapt to life with conditions and bodies that don’t always cooperate with us, we needed resolutions of our own.
So here are nine of my resolutions, created in hopes of helping folks with chronic illnesses with theirs.
1. I will measure my health using my own standards of wellness
Comparing ourselves to others is an easy thing to do, especially in the age of social media. But when you’re living with a chronic condition, those comparisons are almost always unfair.
For example, it can be easy to say, “Doing yoga is a healthy lifestyle choice.” However, for someone with a condition that impacts their joints? Doing yoga might not be healthy at all — in fact, it could be dangerous.
A lot of my coworkers have remarked that I’m “brave” for eating Taco Bell in the office, as though eating something “unhealthy” is a bold choice. However, as someone recovering from an eating disorder, eating food that I’m excited about is often the only circumstance under which I can convince myself to eat a meal.
So Taco Bell, for me, is actually an extraordinarily healthy choice, because choosing to fuel my body instead of starving it is always the right decision. And it’s brave, too — but only because eating disorder recovery requires courage.
Rather than approaching health as one-size-fits-all, maybe it’s time for us to start asking what healthy looks like for us.
And if that means taking a nap instead of attending a yoga class, or eating that spicy potato taco from Taco Bell? Power to us for making the choice that’s best for us.
2. I will push myself only when it’s in my best interest to do so
There’s a prevailing idea in health and fitness that “pushing your limits” is healthy.
Why run a mile when you can run two? If you’re anxious, why not dive headfirst and go to the party anyway? You’ll like it once you’re there, right?
Getting out of your comfort zone is seen as a noble effort, and while it can be, anyone with a chronic condition can tell you that it’s not always a good idea.
Maybe your body is tiring out because you’re, well, tired. Maybe your anxiety is there because you’re at risk of burning yourself out. Maybe your feelings are acting as messengers, letting you know when it’s time to slow down.
There’s no good reason to risk injury, particularly when it comes to chronic illness. In the New Year, I’m going to honor my body and listen carefully when I’m approaching my limits.
There’s a time and place to test your limits, and you — and only you — get to decide when that is.
3. I will view my lived experience as expertise
How many times have you known, intuitively, that something was wrong or off, only to have others insist that you were actually fine?
I hear from people with chronic illnesses all the time that others dismissed their concerns, suggesting that they didn’t have the “medical expertise” to know something was off.
But here’s the thing: You are the expert on your own body. If you know in your gut that something is wrong, you have every right to advocate for yourself to ensure your concerns are addressed.
Whether it’s seeking out a second opinion, pushing back on misguided advice, or asking for additional tests, no one should be discouraging you from trusting yourself and advocating for your health.
4. I will rest when I need to — without judgment
“Rest” has a bad rap, particularly in the United States, where we live by the dogma of “the hustle.”
Overworking (commonly disguised as productivity) is considered glamorous, but something as simple as a nap is depicted as a luxury or — worse — something intended for sloths and not human beings.
Where does this leave those of us who need to rest a little more often to function well? Many of us wind up feeling guilty, questioning if we sleep too much, or criticizing ourselves for not “working harder” or “powering through.”
In the New Year, I’m going to be kinder to myself, affirming my right to rest.
If your body is asking for 10 hours of sleep every night, maybe it’s because you need it. If you find yourself crashing around 3 in the afternoon, don’t feel guilty for resetting your system with a nap. If you need to take 15 minutes to meditate in the office when your anxiety spikes? Take the time.
Celebrate the fact that you’re listening to your body and honoring what it needs.
5. I will practice asking for what I need
As a people-pleaser, I have a hard time asking for help when I need it.
I’ve found that, by and large, a lot of people with chronic illness feel guilty asking for support, because they feel like a burden on the folks that they love.
But here’s the thing: It’s okay to ask for help.
It’s okay — it really, really is. I promise you this.
Every single human being needs help at some point or another. And if you’re struggling with a chronic condition, that’s all the more reason to ask.
It takes courage to voice when you need support, and when we find that courage, we open up a space where the people around us have permission to be honest about their needs, too.
You’re making the world a better place just by keeping things real.
6. I won’t apologize for being honest about my struggles
Speaking of realness, chronic illness isn’t a walk in the park (in fact, some of us can’t walk at all, or can’t do so without mobility devices — so I mean that in the literal sense, too).
But many of us feel pressured to put on a brave face, and to make our lives appear pretty enough for Instagram.
And honestly, it’s tiring to make our conditions seem shiny and inspirational.
Here’s what I think: The world needs more honesty. Not only that, but none of us have to apologize for that honesty, either.
If you’re having a flare or a rough day? You get to voice that if you choose to. If you’re staring down a scary medical procedure? You don’t have to pretend that you’re not afraid.
You are allowed to take up as much space in the world as your heart desires.
The right people are going to be there for you through it all. Being visible as someone with a chronic illness can be a form of empowerment, and the real problem lies with those who view their comfort as more important than your ability to thrive.
7. I will celebrate my successes, big or small
At times when my disordered eating is acting up, getting whipped cream on my latte at Starbucks — or walking into a Starbucks at all — is a huge success.
Yet for most others, getting in line and ordering their drink is simply a mundane part of their routine.
For people with chronic illness, the smallest things can be huge victories. But we don’t always acknowledge them as such. For 2019, I want to slow down enough to celebrate my success, whether it’s a breakthrough in therapy or just getting out of bed in the morning.
When’s the last time you celebrated your progress — on your own terms?
8. I will try to be assertive with my clinicians
While I’ve been fortunate to have some of the greatest clinicians ever, I’ve also had some lousy ones, too. Looking back, I wish someone had told me that I was allowed to be assertive, ask questions, get second or even third opinions, and be direct about my expectations.
There are some populations — like people of size or folks with disabilities — who find that their clinicians can be especially dismissive, often without intending to be.
For example, a doctor who tells an fat person that they need to lose weight when they came to discuss an unrelated condition (like a urinary tract infection), or one that recommends they try a form of treatment that isn’t helpful to them (like a therapist who once told me that meditation would fix my OCD).
Practicing being assertive can make a big difference. Some statements I’ve been rehearsing:
- “This isn’t what I’m here to discuss. I’d like to focus on…”
- “In my experience, that hasn’t been helpful. What else did you have in mind?”
- “Can you explain why you believe this recommendation will improve my symptoms?”
- “I’m confused, because I’ve read clinical research that suggests the opposite is true. How recent is the information you’re going off of?”
Many of us don’t realize that these are statements we can actually make, or we’re afraid of coming across as confrontational. But remember, clinicians are here to help us — it’s their job! — and we have every right to the best possible care.
9. I will step away from conversations that hurt me if I need to
“Isn’t fibromyalgia just a made-up illness?”
“Oh, I have OCD, I hate when my apartment gets messy.”
“If you can walk, why are you using a wheelchair?”
Even the most well-intentioned people can say harmful things about chronic conditions and disabilities. And while we might feel responsible for taking up the cause and correcting them, the reality is, we don’t always have the energy to.
In fact, those conversations can become dehumanizing, and the pain of trying to educate someone isn’t always worth it.
In 2019, give yourself permission to opt out if you need to
If you aren’t sure how, here are some examples:
- “That’s actually not true of fibromyalgia. I would encourage you to do a little more reading, because you could be hurting someone without even realizing it, like you did just now.”
- “Actually, I’m really uncomfortable with that stereotype. I need to step away from this conversation, but I hope you’ll learn more about OCD and reconsider making comments like that.”
- “I don’t feel good about having a conversation like this, just because comments like these are painful to hear. But there are a lot of resources online that you might find helpful. I would start there.”
Remember: You aren’t obligated to be anyone’s teacher, especially as it relates to your own experiences, no matter what anyone tells you!
In 2019, you’re in charge — so it’s time to make the choices that are best for you, and trust that you know yourself and your body well enough to make those decisions.
Cheers to remaining fierce in the face of chronic illness this year. I hope that, as you ring in the New Year, you take time to celebrate everything it took to get here!
Sam Dylan Finch is a leading advocate in LGBTQ+ mental health, having gained international recognition for his blog, Let’s Queer Things Up!, which first went viral in 2014. As a journalist and media strategist, Sam has published extensively on topics like mental health, transgender identity, disability, politics and law, and much more. Bringing his combined expertise in public health and digital media, Sam currently works as social editor at Healthline.